Universal vs. adaptive – kudos to Vancouver

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I learned something new yesterday. (As you get older this happens less and less. Also if you’re 20 years old and know everything …). I learned that Vancouver is the only city in Canada with its own building code.

Vancouver has taken these powers to ban doorknobs from future housing projects. Instead, lever-type handles are mandated. What does Vancouver have against doorknobs? Probably nothing personal, but they’re simply not as accessible for many people (like people with RA who have difficulty grasping and turning a standard knob). Vancouver is using its unique powers and building code to move toward universal design rather than adaptive design.

Most construction is adaptive. That is, you build something, then you adapt it to whatever is needed. Kind of like building a house then installing a wheelchair ramp. Universal design looks at the needs of those who will use it and incorporates those features into the initial design — like putting in levers rather than knobs.

RA’s super hero, Rheumatoid Arthritis Guy, has a strong architectural and design background. He has written often about his dream that building design would incorporate just this kind of thinking. Well, kudos to Vancouver. They’re not all the way there, but taking a step like this is proof positive that people who have the power to make changes are actually thinking about things like this. (There’s a lot of free thinking out there on the left coast of North America. Some of it is actually brilliant.)

I don’t know why this news makes me so incredibly happy. Maybe because I’m married to an architect so I get a first-hand look at some of the archaic and convoluted building (and even ADA) codes out there. And once these codes are accepted, inertia alone makes them difficult to change. It may only be one candle in the darkness, but I am hopeful that other cities and government agencies can see the amazing clarity of Vancouver’s approach.

I hope whatever doors open in your life today bring you welcomed surprises. Thanks for checking in.

It’s always something

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So I have this new thing going on. (I know, right?) It’s this pins-and-needles sensation that runs down my right arm. It varies from the feeling that I have ants crawling on me to real electrified zingers. It always starts at the top back of my shoulder and travels down the front of my arm and ends up inside my thumb. It’s happens consistently when I do certain things, so I’m thinking a nerve gets trapped somewhere. (Patient: “Doctor, doctor it hurts when I do this.” Doctor: “Well, stop doing that.”) Based on what triggers and relieves it, I suspect the issue is in my neck rather than my shoulder, although I have had two rotator cuff surgeries on that shoulder.

I was telling my friend about it and she asked me, “Do you think this RA related or something new?”

That actually took me aback because even though I preach that “normal” people have joint issues, I had automatically assumed that RA played a part in whatever degeneration is causing this latest problem. But obviously not everyone who needs spinal or shoulder surgery suffers from RA.

I’ve written before about the fact that once you’ve been diagnosed with RA, it’s hard to evaluate aches and pains without putting them in the RA perspective. Sometimes it is, after all, normal to hurt as we all know that anyone (even those lucky people without RA) who overdoes will likely have sore muscles and even sore joints.

In the long run, I don’t guess it matters. The good news is that I have follow-up appointments with both my shoulder surgeon and my neurosurgeon (who did my earlier back surgery) in the near future. They’re bright, talented people who listen to their patients so I’m sure we’ll figure out what’s going on and how to relieve it.

I hope that whatever zingers are in your day today bring a smile to your face. Thanks for checking in.

Not the way I planned it

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For a week or so I’ve been thinking about a blog loosely titled, “Top Five Things They Don’t Tell You About RA.” My thinking was that people, particularly those who are newly diagnosed, get overwhelmed with all the negative things that come up when you research the disease. You know what I’m talking about, particularly those statistics about disability.

Part of the impetus to write such a post is the lack of general knowledge of RA. It’s not exactly like some other chronic diseases. For example, I have diabetes on both sides of my family and I’ve seen how people with the disease can manage it and lead full, rewarding lives. Now that I’ve lived with RA for more than five years, I thought it would be good to put a bit of similar perspective in the overall mosaic of RA information out there.

The first point I was going to include was fine — something along the lines of “It’s a diagnosis, not a prison sentence.” The point being that while the statistics are concerning, there are large percentages of people with RA who (like my diabetic friends) manage the disease and live life well, including those who go into remission.

But then I ran into trouble because I kept coming up with negative things I didn’t know when I started this journey. For example, when I was younger I swore I could never be a drug addict because I would never, ever be able to inject myself. Says she who has been giving herself injections of biologic medications for the last five years. And for all of us needle-phobes, there is also the ongoing onslaught of lab tests, flu and pneumonia shots, etc. And while they don’t necessarily tell you that sometimes you’ll feel like a pin cushion, the fact is, sometimes you do.

I was also going to talk about how empowered you must be in managing the disease and that not all rheumatologists are created equal. If you aren’t able to communicate with your doctor, then you need to find one who will listen. However, pointing out that not all rheumatologists care and that there is a decided gulf between current medical thinking and the patient experience, would also be pretty scary to someone who is newly diagnosed. (It’s certainly scary for me!)

While the original post isn’t going to see the light of day (or cyberspace), what happened is that I’ve come to the conclusion that it is all about the patients and how they approach the disease. You have to have the resiliency to make it through the bad times (and there will be those) and the mental attitude to make the best possible outcome that you can. That means not only taking care of yourself, but (if possible) not letting your disease overwhelm your life. It’s true that there are people who are in severe pain and who are disabled and, for those, that’s not an option. But for the rest of us, keeping a firm eye on the life we want to live gives us both the hope and the determination to do so.

So for those of you who are recently diagnosed (and even those “old timers” like me), there will be a lot of things you will learn as you deal with the disease. Not all of them will be pleasant. You will no doubt build a lot of inner strength as you move forward. But know that there are a lot of us who are also making that journey, so there is a world of wisdom, support, and even comfort available to you.

I hope whatever top five things happen in your life today are wonderful.

Thanks for checking in.

Okay, THIS is the final knee replacement post

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Okay, I promise this is the last word on my knee replacement. I went to the surgeon today for my final check up and everything looks good. I’m released until my one-year check up in 2014.

I have added a new page with pictures that range from the day after surgery through today. Click on the TKR Surgery Pics link above. (Not for the faint of heart.)

Thanks for checking in.

Final Update on the Replacement Knee

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It seems like forever since I posted. It’s been a crazy couple of weeks with a huge project dropped in my lap (I wasn’t expecting anything until next month), a trip to Washington, D. C. for business and a full day in jury duty.

I did pretty well traveling on my own to DC. The knee is healing nicely (as is the back surgery) and the Cimzia seems to be keeping the worst of the RA symptoms at bay (although this lovely rainy fall weather we’re having in Dallas is giving it a run for its money).

But, about the new knee. It’s doing quite well. I’ve gotten to point, as I have with my new hip and shoulder, that I don’t really think about it any more. True, there are times that it does bother me and it still “clunks” more than I would like (meaning there is still some swelling/inflammation floating around), and occasionally for no particular reason, it seems to seize up. But all of those things are generally short-lived and not very intense when they do happen. So overall I’m quite pleased. I actually wore some 3-inch high heels to a wedding a couple of weeks ago without real issue (but don’t tell my doctor that!).

Here’s the latest picture taken just past the three-month post surgery point. As you can see, most of the swelling is gone and the scar is looking pretty healthy. There areIMG_0228 parts of the scar that have all but disappeared, which is a good thing.

I go see my doctor in a week or so, but unless there is something worth mentioning (which I hope there isn’t), I’m assuming that I’m on the downhill slope to total recovery and probably won’t dedicate another whole post to the knee.

I appreciate everyone’s interest and good wishes as I’ve gone through this process. Thanks for checking in.

Out with the Orencia!

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As I reported in recent posts, I had a horrible flare and my Orencia hasn’t seemed to be “kicking back in” after my recent knee surgery. After the flare, I moved up the date of my rheumatology appointment because I didn’t want to wait another month feeling like I have been. The appointment was today.

I had my labs done last week so my rheumatologist would have my latest blood work. My labs have always come back cold stone normal — even when it’s evident that I’ve got inflammation going on. It was the same today. My labs looked good, but it’s apparent that the joints in my hands, feet, elbows, knees and spine are all swollen and tender. That’s way too much inflammation to have if a drug is working, so it was apparent that the Orencia was not, in fact, working as it should.

Since I’ve been on most of the biologics (Humira, Simponi, Enbrel, and now Orencia), my choices are getting pretty limited. My rheumatologist suggested that we try Cimzia or Remicade. Since I’m really, really, really not into infusion therapy, I’m switching to Cimzia as of today.

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Cimzia comes in prefilled syringes. (The company says that the syringes have been designed in conjunction with OXO Good Grips to be easy for arthritic hands to use.) The dosing is front-loaded so you take two injections the first week, then two more injections two weeks later, then two more injections two weeks after that. After the course of double injections, you move to the “regular” schedule which is to take a single injection every other week.

So, since it had been long enough since my Orencia injection, my rheumatologist did the first two injections when I was in her office.

So far no bad side effects, although I had a funny taste in my mouth for a while after the injections which quickly faded.

Fingers crossed that this works and/or they come up with another wonder drug that doesn’t have to be infused if they don’t.

I hope whatever is new in your life brings you a smile. Thanks for checking in.

 

And wash your hands when you’re finished

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I have a good friend who happens to be an accomplished writer. She has, on more than one occasion, commented that writing is like using the toilet. It should be done in private and you should wash your hands afterward.

I have found yet another activity that fits in that category: searching for hand-washinghealth insurance quotes.

In addition to researching insurance policies for my husband’s company, I’ve been looking for my own coverage. Having been laid off last year, I have been covered under COBRA through my previous employer’s plan. My COBRA coverage extends through May next year, so technically I can stay on that plan for a few more months. However, I will have to switch plans when COBRA expires, meaning that I will have to start all over again on paying against deductibles, out-of-pocket, etc. with the new policy.

And while I could join my husband’s company policy as a covered spouse, there are similar reasons why that won’t necessarily work either.

Texas is one of the states that uses the national health exchange (www.healthcare.gov) rather than establishing its own. If you live in the US, you can’t have avoided all the news concerning the difficulty the site has had due to the overload of people trying to log in. While waiting for the logjam to clear so I could log in, I visited the individual sites for the insurance companies that seem to be common to my plethora of doctors: Blue Cross Blue Shield, Cigna, and Aetna.

Here’s what I’ve found:

  • If you are eligible for tax credits/discounts because of low income, you should visit the national health care exchange www.healthcare.gov to verify your eligibility. If your state has a health care exchange, you may also be able to do that there.
  • The individual insurance company sites are easier to access and easier to navigate than the national exchange. The quotes for the same plan are exactly the same on the national exchange as are offered through the insurance companies’ sites. Therefore, if you’re not claiming a discount/credit against health insurance costs, it’s probably easier for you just to go directly to the insurance companies’ sites.
  • Both the national exchange site and the individual company sites let you “save” and “compare” various policies. You can further filter the policies by such things as premium cost, HMO vs. PPO, etc. This helps narrow down the field to policies which might better fit your needs.
  • The good news is that plans starting January 1 cannot take into account prior medical history or existing conditions. This is a good thing for those of us with RA (and joint replacements, and high blood pressure, and high cholesterol, and/or other chronic conditions). So if you can wait until January 1 to start your coverage, it might be a good thing.
  • If you’re 30 years old and a non-smoker, you can find pretty good coverage for around $200 – $250/month. While a non-smoker, I’m no longer 30 years old, and the policies I’m considering are around $750 to $900 per month.
  • Be sure and consider all your medical costs when looking at a health policy. Because I have somewhere between 15 and 20 doctors appointments a year and I have about a dozen prescription medicines I take, I have to look at the cost of office visits and drugs as well as premiums — particularly since I take expensive drugs like Orencia which run about $2000/mo. It turns out that some of the higher-monthly-premium plans are actually more cost effective because they pay a higher percentage of drug costs and have lower office visit co-pays.
  • If you’ve been trying to get into www.healthcare.gov and have had issues, keep trying. I was able to log in and set up my account on a Wednesday evening a week or so after the exchange opened on October 1. I suspect that some of the initial rush is over and the government has been working to improve access.
  • You have until December 15 to sign up for insurance starting January 1.
  • The national site only handles policies that start January 1 when the new health care laws become effective. If you need insurance before then, you should visit individual company sites, or a private marketplace like http://www.ehealthinsurance.com.

At this point, I don’t know which plan I’ll choose, but at least I’ve got the information I need to make an informed decision. I’m appalled at the premium cost, but with my health, I know that the premiums are a small pittance against what I would be paying (or would be able to afford to pay) for my health care needs.

I hope that your insurance requirements are a simple matter. Thanks for checking in.

The way we were …

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I was in a shoe store last week with my husband. We were actually shopping for a pair of shoes for him (which is why a husband was in the store — as all the “wives” reading this roll their eyes). I saw Shoethis beautiful pair of heels and instantly fell in love. These are my kind of shoes. Even five years ago I would have bought them. They would have been paired with a sleek little suit for the office or something cute and cocktail-ish for a party. Regardless, I wouldn’t have walked out of the store without them.

However, a new hip and a new knee, along with RA in the joints of my feet, make it nearly impossible to wear 3″ heels. Ever. Again.

I do wear them probably a couple of times a year when there’s a particularly special occasion, but at the end of it, I’m always grateful to have them off.

You know, it’s not the big things in life I miss. I don’t miss my hip, shoulder, or knee which have been replaced. Those things hurt and I have assimilated the replacement parts as if I had been born with them.

It’s the little things I miss like not being able to wear really cute shoes all the time. Or not being able to run. And I don’t like some of the new things in my life such as never knowing how I’m going to feel in the morning. Or having to inject my self once a week — in the abdomen.

All of us who have RA have been robbed of certain things we love and been given dubious gifts in return. The worst gift of all is knowing that we will never, ever be truly well again. Even our best days are simply illusions which can and will be dispelled by the next flare.

But as dire as this sounds, all is not lost. Because without this sacrifice we wouldn’t stand a chance of ever finding a cure. If RA didn’t hurt, if it didn’t disable, if it didn’t kill, then no one care enough about it to find a better treatment or to search for a cure. And if I have to give up my shoulder, and my hip, and my knee to make it worthwhile for researchers to continue their quest, then I’ll gladly do it.

I just wish I could wear those really cute shoes in the meantime.

I hope whatever sacrifices you face today reap amazing rewards. Thanks for checking in.

When good people make bad decisions

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Okay, let’s face it, we’ve all made bad decisions at some time or another. The fact that I’m married to my (count ‘em) fourth husband is pretty much direct evidence that I have, in fact, screwed up at least three times in my life. (In case there’s any doubt, I believe I’ve “finally” made the right decision on the fourth one!)

I want to believe that most of us make those decisions with the best intentions. Unfortunately, however, intentions don’t count for a lot when the consequences come rolling around.

I finished my physical therapy sessions for my new knee last week. (It’s working pretty well, thanks for asking.) I was due to switch to fitness sessions this past Monday. The difference being that physical therapy concentrates on my knee and is paid for by insurance whereas the fitness sessions are geared to an overall workout and I get to pay for them myself.

On Monday, my therapist wasn’t well and the center contacted me to see if I wanted to cancel or reschedule with a different therapist. Since this was the first session where we were to establish the workout routine, I really didn’t want to work with a different therapist, so I opted to skip Monday and pick up on the next session scheduled for the following Wednesday. (This is not the bad decision. This decision, in fact, was pretty good.)

Tuesday I wasn’t feeling great. I was kind of achy all over — sort of like you feel when you’re getting the flu or, in my case, when you’re headed for a flare. Like a lot of us, I occasionally get a tender, swollen joint here or there. I don’t really consider that a flare. When I flare, I get the “stay in bed because it hurts all over and even turning over will bring tears to your eyes” kind of flare.

Wednesday came and I wasn’t feeling much better. If anything, I was a bit worse. However, I didn’t want to lose the momentum of going to the fitness/rehab center twice a week, so I decided to keep the fitness appointment. (That was the bad decision.)

Yep, Wednesday night and all day Thursday I flared. Not only did I have the hurt-all-over flare, throughout the night and day, I experienced severe piercing pains in various joints. It was if the RA god (if there is one) was alternately sticking an ice pick in one random joint at a time. First it was the ankle, then the shoulder, then the wrist and joints of the right hand, then somewhere else.

I’m fortunate that I don’t flare often and usually don’t flare for long. It’s Friday and I am doing better after a day in bed taking pain medication and extra NSAIDs.

But the point is, I might have avoided the whole unpleasant situation if I had just listened to my body. True, a flare might have been inevitable, but going through a whole-body workout routine for the first time no doubt contributed to it happening and to its severity.

If you have been following this blog for very long, you know that it’s peppered with advice to listen to your body and be good to yourself. I did think that working out was being good to my body, but I certainly wasn’t listening to my body.

I am a bit concerned not only that I had a flare, but that my RA drugs (Orencia and Arava) don’t seem to be “kicking in” like they should after my knee surgery. I’ve had three surgeries in the past year and each one has required that I’ve been off the drugs for about a month each time — two weeks before surgery and two weeks after. There is some discussion in the RA community that drugs don’t seem to work as well after you’ve been off of them and then start them again. I will tell you that my symptoms seem to be getting worse rather than better and this flare — the first in many months — is just icing on the cake.

My next appointment with my rheumy isn’t until sometime in November. I think I will take my own advice and see if I can’t get an earlier appointment to discuss this with her. I really don’t want to change treatment plans, but there is no sense staying on something that doesn’t appear to be helping.

In the meantime, I will try (as you should) to listen to my body and be good to myself.

Thanks for checking in.

Open access – not for everyone

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I was in the waiting room of one of the (many) physical therapy practices I’ve visited over the past several years when a couple came in to talk to the receptionist and set up some physical therapy visits. The couple had just moved to Texas and was apparently quite surprised to hear that they just couldn’t set up physical therapy visits (like any other healthcare provider), that a prescription is required. Apparently, many states have open access to physical therapists — which I happen to think is a great idea. A bit of further investigation (see previous link) indicates that access restrictions to physical therapists vary greatly from no restrictions (Alaska, for example) to convoluted (New Jersey to cite one).

I’m wrapping up my PT sessions associated with my knee replacement this week. I don’t believe in physical therapy just for the sake of it, but I do believe it has a valuable place in a health and wellness plan — particularly for anyone with RA. I’ve often thought that a visit with a therapist when I’ve had a specific complaint (such as hip bursitis) would be worthwhile to learn non-drug techniques to help resolve the issue. Unfortunately, in Texas, that requires a visit to a doctor to prescribe it, and it’s usually a full course of 30 days or 12 visits, and is often overkill for when you want/need something more than what a personal trainer at the gym can offer.

But what has happened is that my current physical therapy group (which is part of one of the major hospital systems here) is offering “wellness” visits. This is where you work with a therapist on wellness/fitness issues. It is not considered physical therapy and is not covered by insurance.

That being said, with three major surgeries (rotator cuff, spinal fusion, and knee replacement) within 10 months, I’ve lost a lot of strength and fitness. And trust me, I do not trust a 20-something physical trainer to understand the limitations of my three joint replacements, back surgeries, and progressive rheumatoid arthritis. However, I do trust my current physical therapist who has been working with me on my knee. So I have signed up for six weeks at twice a week to work with her. The goal is to formulate a program (both in the gym and in the pool) that will start me back on the road to wellness, helping build my strength and stamina back in a safe and sane way. It may not take the full six weeks to formulate the plan, but I figure if I stick with it for six weeks, hopefully I will continue the program after the sessions expire. I can always sign up for individual sessions when I’m ready to make a change in the future.

In researching this, I saw several sites that are striving for open access not only for Texans but across America. And while I agree that there needs to be some regulation of all medical professionals (to help avoid abuse), I am also a firm believer that important specialties like physical therapists are a valuable part of many people’s health care and should be readily accessible.

And if your state allows open access to physical therapists, you should take advantage of this opportunity when the need arises. Not all of us are so lucky.

Thanks for checking in.

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